(Family) planning ahead: user-centered design of the birth control after pregnancy patient decision aid and protocol for delivery and evaluation

Contraception ◽  
2017 ◽  
Vol 96 (4) ◽  
pp. 289
Author(s):  
G Stevens ◽  
KZ Donnelly ◽  
RN Theiler ◽  
H Washburn ◽  
EJ Woodhams ◽  
...  
2019 ◽  
Author(s):  
Gratianne Vaisson ◽  
Thierry Provencher ◽  
Michele Dugas ◽  
Marie-Eve Trottier ◽  
Selma Chipenda Dansokho ◽  
...  

Background: Multiple guidelines recommend involving patients and stakeholders in developing patient decision aids; however, best practices have yet to be identified. User-centered design is a well-established approach for engaging users in developing tools. We aimed to compile reports of patient decision aid development, using a user-centered design framework to synthesize evidence of existing practices and identify potential opportunities for improvement.Methods: We conducted searches in MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, the ACM library, IEEE Xplore and Google Scholar. We included articles describing (1) at least one development step of a patient decision aid, (2) at least one development step of user- or human-centered design of another patient-centered tool, and/or (3) evaluation of included decision aids and other patient-centered tools. Two analysts independently screened for inclusion, assessed study quality, and extracted data.Results: We included 623 articles describing 390 projects: 325 patient decision aid projects and 65 user-centered design projects. Fifty percent of patient decision aid projects reported involving users in at least one development step for understanding users, 35% in at least one development step for developing/refining the prototype and 84% in at least one development step for directly or indirectly observing prospective users’ interaction with the prototype. User-centered design projects reported 91%, 49% and 92%, respectively. Seventy-four percent of patient decision aid projects reported iterative development processes with median 3 development cycles (interquartile range 2-4); 92% of user-centered design projects reported iterativity, with median 3 development cycles (interquartile range 2-3). Sixty-six percent of patient decision aid projects and 89% of user-centered design projects reported preliminary evaluations such as usability testing or feasibility testing.Conclusions: We identified 3 key opportunities for improving the user-centeredness of patient decision aid development: involving users earlier to understand their needs, goals, strengths, limitations, context and intuitive processes; asking about and observing users’ interactions with developing versions of the decision aid; and reporting changes between iterative cycles. Additionally, developers of patient decision aids and other patient-centered tools may wish to more often involve patients, clinicians and other users in co-design of prototypes and in formal advisory or partnership roles.


2021 ◽  
Vol 41 (3) ◽  
pp. 261-274 ◽  
Author(s):  
Gratianne Vaisson ◽  
Thierry Provencher ◽  
Michèle Dugas ◽  
Marie-Ève Trottier ◽  
Selma Chipenda Dansokho ◽  
...  

Background When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools. Methods We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users. Results We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at least 1 step for understanding users, 35% in at least 1 step for developing/refining the prototype, and 84% in at least 1 step for observing users’ interaction with the prototype. In comparison, other personal health tool projects reported 91%, 49%, and 92%, respectively. A total of 74% of patient decision aid projects and 92% of other personal health tool projects reported iterative processes, both with a median of 3 iterative cycles. Preliminary evaluations such as usability or feasibility testing were reported in 66% of patient decision aid projects and 89% of other personal health tool projects. Conclusions By synthesizing design and development practices, we offer evidence-based portraits of user involvement. Those wishing to further align patient decision aid design and development with user-centered design methods could involve users earlier, design and develop iteratively, and report processes in greater detail.


2021 ◽  
pp. 0272989X2110141
Author(s):  
Holly O. Witteman ◽  
Kristin G. Maki ◽  
Gratianne Vaisson ◽  
Jeanette Finderup ◽  
Krystina B. Lewis ◽  
...  

Background The 2013 update of the evidence informing the quality dimensions behind the International Patient Decision Aid Standards (IPDAS) offered a model process for developers of patient decision aids. Objective To summarize and update the evidence used to inform the systematic development of patient decision aids from the IPDAS Collaboration. Methods To provide further details about design and development methods, we summarized findings from a subgroup ( n = 283 patient decision aid projects) in a recent systematic review of user involvement by Vaisson et al. Using a new measure of user-centeredness (UCD-11), we then rated the degree of user-centeredness reported in 66 articles describing patient decision aid development and citing the 2013 IPDAS update on systematic development. We contacted the 66 articles’ authors to request their self-reports of UCD-11 items. Results The 283 development processes varied substantially from minimal iteration cycles to more complex processes, with multiple iterations, needs assessments, and extensive involvement of end users. We summarized minimal, medium, and maximal processes from the data. Authors of 54 of 66 articles (82%) provided self-reported UCD-11 ratings. Self-reported scores were significantly higher than reviewer ratings (reviewers: mean [SD] = 6.45 [3.10]; authors: mean [SD] = 9.62 [1.16], P < 0.001). Conclusions Decision aid developers have embraced principles of user-centered design in the development of patient decision aids while also underreporting aspects of user involvement in publications about their tools. Templates may reduce the need for extensive development, and new approaches for rapid development of aids have been proposed when a more detailed approach is not feasible. We provide empirically derived benchmark processes and a reporting checklist to support developers in more fully describing their development processes. [Box: see text]


2021 ◽  
pp. 0272989X2199662
Author(s):  
Tammy C. Hoffmann ◽  
Mina Bakhit ◽  
Marie-Anne Durand ◽  
Lilisbeth Perestelo-Pérez ◽  
Catherine Saunders ◽  
...  

Background Patients and clinicians expect the information in patient decision aids to be based on the best available research evidence. The objectives of this International Patient Decision Aid Standards (IPDAS) review were to 1) check the currency of, and where needed, update evidence for the domain of “basing the information in decision aids on comprehensive, critically appraised, and up-to-date syntheses of the evidence”; 2) analyze the evidence characteristics of decision aids; and 3) propose updates to relevant IPDAS criteria. Methods We searched MEDLINE and PubMed to inform updates of this domain’s definitions, justifications, and components. We also searched 5 sources to identify all publicly available decision aids ( N = 471). Two assessors independently extracted each aid’s evidence characteristics. Results Minor updates to the definitions and theoretical justifications of this IPDAS domain are provided and changes to relevant IPDAS criteria proposed. Nearly all aids (97%) provided a year of creation/update, but most (81%) did not report an explicit update or expiration policy. No scientific references were cited in 33% of aids. Of the 314 that cited at least 1 reference, 39% cited at least 1 guideline, 44% cited at least 1 systematic review, and 23% cited at least 1 randomized trial. In 35%, it was unclear what statement in the aid the citations referred to. Only 14% reported any of the processes used to find and decide on evidence inclusion. Only 14% reported the evidence quality. Many emerging issues and future research areas were identified. Conclusions Although many emerging issues need to be addressed, this IPDAS domain is validated and criteria refined. High-quality patient decision aids should be based on comprehensive and up-to-date syntheses of critically appraised evidence.


2021 ◽  
pp. 0272989X2110088
Author(s):  
Rachel Thompson ◽  
Zoe Paskins ◽  
Barry G. Main ◽  
Thaddeus Mason Pope ◽  
Evelyn C. Y. Chan ◽  
...  

Background More stringent policies for addressing conflicts of interest have been implemented around the world in recent years. Considering the value of revisiting conflict of interest quality standards set by the International Patient Decision Aid Standards (IPDAS) Collaboration, we sought to review evidence relevant to 2 questions: 1) What are the effects of different strategies for managing conflicts of interest? and 2) What are patients’ perspectives on conflicts of interest? Methods We conducted a narrative review of English-language articles and abstracts from 2010 to 2019 that reported relevant quantitative or qualitative research. Results Of 1743 articles and 118 abstracts identified, 41 articles and 2 abstracts were included. Most evidence on the effects of conflict of interest management strategies pertained only to subsequent compliance with the management strategy. This evidence highlighted substantial noncompliance with prevailing requirements. Evidence on patient perspectives on conflicts of interest offered several insights, including the existence of diverse views on the acceptability of conflicts of interest, the salience of conflict of interest type and monetary value to patients, and the possibility that conflict of interest disclosure could have unintended effects. We identified no published research on the effects of IPDAS Collaboration conflict of interest quality standards on patient decision making or outcomes. Limitations Because we did not conduct a systematic review, we may have missed some evidence relevant to our review questions. In addition, our team did not include patient partners. Conclusions The findings of this review have implications for the management of conflicts of interest not only in patient decision aid development but also in clinical practice guideline development, health and medical research reporting, and health care delivery.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
I. E. H. Kremer ◽  
P. J. Jongen ◽  
S. M. A. A. Evers ◽  
E. L. J. Hoogervorst ◽  
W. I. M. Verhagen ◽  
...  

Abstract Background Since decision making about treatment with disease-modifying drugs (DMDs) for multiple sclerosis (MS) is preference sensitive, shared decision making between patient and healthcare professional should take place. Patient decision aids could support this shared decision making process by providing information about the disease and the treatment options, to elicit the patient’s preference and to support patients and healthcare professionals in discussing these preferences and matching them with a treatment. Therefore, a prototype of a patient decision aid for MS patients in the Netherlands—based on the principles of multi-criteria decision analysis (MCDA) —was developed, following the recommendations of the International Patient Decision Aid Standards. MCDA was chosen as it might reduce cognitive burden of considering treatment options and matching patient preferences with the treatment options. Results After determining the scope to include DMDs labelled for relapsing-remitting MS and clinically isolated syndrome, users’ informational needs were assessed using focus groups (N = 19 patients) and best-worst scaling surveys with patients (N = 185), neurologists and nurses (N = 60) to determine which information about DMDs should be included in the patient decision aid. Next, an online format and computer-based delivery of the patient decision aid was chosen to enable embedding of MCDA. A literature review was conducting to collect evidence on the effectiveness and burden of use of the DMDs. A prototype was developed next, and alpha testing to evaluate its comprehensibility and usability with in total thirteen patients and four healthcare professionals identified several issues regarding content and framing, methods for weighting importance of criteria in the MCDA structure, and the presentation of the conclusions of the patient decision aid ranking the treatment options according to the patient’s preferences. Adaptations were made accordingly, but verification of the rankings provided, validation of the patient decision aid, evaluation of the feasibility of implementation and assessing its value for supporting shared decision making should be addressed in further development of the patient decision aid. Conclusion This paper aimed to provide more transparency regarding the developmental process of an MCDA-based patient decision aid for treatment decisions for MS and the challenges faced during this process. Issues identified in the prototype were resolved as much as possible, though some issues remain. Further development is needed to overcome these issues before beta pilot testing with patients and healthcare professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, healthcare professionals and the quality of care.


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